Early Diagnosis

March 28, 2011 at 10:11 pm

CBirdy ~ The literature says the earlier you are diagnosed and get appropriate treatment the greater your chances of recovery. After several years of being misdiagnosed and going to four Neuros I ended up in the hospital. One evening a nurse came in and asked me if she could look at my chart ~ well, yeah, I said. It took her less than a minute to say “hmm, looks like GBS, I’m going to put a note in your chart…..next day my doc (a GP) looks at it and says “I think that’s it!” After too long, I finally get to a neuro again and he sends me to another neuro who specializes in peripheral neuropathies and yup its CIDP, and recommends IVIG. Meanwhile back at the ranch my neuro Rx’s me to plasmaphersis(!) which did not work so, totally bummed out I managed for a number of years and finally asked about IVIG ~ OK and WOW – did that ever work for me. I refused corticosteroids/predisone whatever they call it (long story). I think back and wish they had 1) diagnosed me sooner (like one-minute) and 2) got me into IVIG (but didn’t). Consider yourself fortunate for an early diagnosis and (while I won’t do steroids they are certainly a part of a treatment plan that others write about) and ask about IVIG. Not every one responds the same but the statistics lean heavily in the IVIG direction. As you have probably noticed there are lots of opinions about what to take, how much, when and all that. The bottom line for me was to learn as much as possible, read everything, ask questions, take notes, stay as positive as possible, and [U]do not give up[/U]. It’s a journey, it can be lonely, it can be scary, confusing, have its ups and downs, but it sounds like you are getting good care. My best wishes to you.

Early diagnosis

April 23, 2007 at 4:59 pm

It sounds like they diagnosed and treated him early. That is so critical.
The faster they know what is wrong, the faster they can stop any further damage.
I wish it was easy to do though. Not in very many cases.
Trudy, natesmom